Want to discuss prolapse bladder or any kind of prolapse

Posted by Tanglefoot @tanglefoot, Aug 2, 2015

I am looking to discuss prolapse bladder or any kind of prolapse that other ladies have experienced as well. I would also like to comment on incontinence as well. There is a lot to talk about when it comes to prolapse bladder etc and it seems to be a silent epidemic among women. If there are others out there like me, lets talk about it and I have some solutions. I am surviving prolapse bladder without surgery and I have been living with it for over ten years. I wear a support garment that is light and easy weight and fits right under my existing underwear. Don’t know what you are doing or wearing, but I would like to hear from you. Thanks.
Tanglefoot

***NOTE FROM THE COMMUNITY DIRECTOR***

February, 2017.

Thanks to a Connect member, it was brought to our attention that @tanglefoot may have a vested interest in promoting the support garment “hideaway” mentioned in this discussion. Further investigation revealed that @tanglefoot is the designer and inventor of this product, and that she routinely posts on discussion forums using pseudonyms. Posting solicitations or advertisements of any kind violates Mayo Clinic Connect’s Terms of Use. We have decided to leave @tanglefoot‘s past messages as to not interrupt the flow of conversation, but she will no longer be able to post to the community.

Colleen Young

Community Director, Mayo Clinic Connect

@pizon

I wish you the best of luck….I too had the bladder lift repair mine was done with stiches no mesh I just wanted to share if you are looking on the East Coast DO NOT USE Dr. Howard Goldstein in the state of DE …. he is a URO/GYN and my surgery was successful I had a pelvic nerve condition and the surgery made it worse he did not know what was wrong with me and wanted to keep doing surgery to try to figure it out I was misdiagnosed for over 1 and 1/2 years seeing over 22 dr.s trying to figure out what was wrong with me he never referred me to other dr.'s within the practice (with this practice thru Christiana care the only one in the state of DE) you can not see any other dr. within that practice so he was refring me to dr.'s for my back, a hernia, then told me I had interstitial cycist never did he refer me to a nerve dr he wanted to do a hysterectomy also refred me to p/t for pelvic floor muscle spasams . I had to go out of state to find a good dr. so this I tell you and any other women on this site so they do not have to go thru the hell I did the out of state dr. (also an URO/GYN) told me after just one visit that it was a nerve issue and sent me to a pelvic pain specializes again just do your homework and make sure it is done by a UR)/GYN….the funny thing is I did all my homework and talked with other dr.s in regards to referring him again he was a good surgent just not if you experience any problems afterwards……I am glad I had the surgery I no longer feel as if my insides are falling out with each step I take…Take care

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Thank you for replying. Did the doctor do your bladder repair vaginally or laparoscopic?

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@veronicat

Thanks for the information. I will call his office.
I am not from US, so for me the location of the doctor it’s not that important.
I just need him to be very skilled.
Me too I had hysterectomy done and I experience prolapsed bladder.
I did a lots of Kegel exercises which helped alot. But I still feel that I need surgery because when I’m tired I also feel heaviness in the pelvic floor. I can’t exercise like before and do yoga. I only do stretching and some easy positions in yoga.
I want to ask you if you are not afraid of the mesh since it’s been proven that it gives a lot of complications.
I have found a few good doctors in US that can do the surgery for prolapse bladder without the use of mesh. The doctor that I like the most is in Mayo clinic in Rochester but since I am self paid it is very expensive for the surgery, close to $40,000.
Therefore I am trying to find international insurance that can cover this expense. If anyone on this platform knows about international insurance please contact me.
Than you

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@veronicat
I do not know where you are located but I am in Austin, TX and I had my surgery here by Dr. Tomas Antonini. It was done in 2017, I had very little pain and have had no complications since then. I had a very big (level 4) bladder prolapse. The use of mesh today does not involve the type of mesh that caused all the problems and lawsuits. The mesh today is very thin (like a nylon stocking) and it is not the same mesh as before. Dr. Antonini showed me the old kind vs. the kind he uses because I was very worried about it as well and they are very different. In addition, whether or not your doctor uses mesh is determined by your own unique situation. If your ligaments are weak and your doctor does not believe they can be repaired so that they will hold, then the doctor will likely propose using mesh. Particularly since you may be paying for it yourself, you don't want to have your prolapse reoccur and have to have a second surgery. Since my ligaments were in very bad shape, I had to have the mesh if I wanted it to hold and not have a second surgery. So it is based upon your situation and whether or not your ligaments can be repaired. This is what determines the type of procedure you have. Mine was done with mesh and with the DaVinci robot and it was very noninvasive.

I know that the prospect of travel and the expense is a big consideration for you so I am glad you are doing your research ahead of time. I highly recommend Dr. Antonini as another option for you depending on where you are located. Also, you should be very comfortable with the doctor. I saw 3 before I picked Dr. Antonini. He has a good bedside manner and is very kind. Best of luck to you and please let us know what you decide to do.

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@veronicat
My surgery was done laproscopically with the robot.

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@veronicat

Thanks for the information. I will call his office.
I am not from US, so for me the location of the doctor it’s not that important.
I just need him to be very skilled.
Me too I had hysterectomy done and I experience prolapsed bladder.
I did a lots of Kegel exercises which helped alot. But I still feel that I need surgery because when I’m tired I also feel heaviness in the pelvic floor. I can’t exercise like before and do yoga. I only do stretching and some easy positions in yoga.
I want to ask you if you are not afraid of the mesh since it’s been proven that it gives a lot of complications.
I have found a few good doctors in US that can do the surgery for prolapse bladder without the use of mesh. The doctor that I like the most is in Mayo clinic in Rochester but since I am self paid it is very expensive for the surgery, close to $40,000.
Therefore I am trying to find international insurance that can cover this expense. If anyone on this platform knows about international insurance please contact me.
Than you

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Like Gail mentioned mesh has made improvements. The original mesh caused rejection and complications for many patients and lawsuits abound. My surgery was 4 years ago and I was told I had the "new mesh" which was not associated with the same complications (yet of course was fearful because of my extensive fiber allergies). I was assured this material did not contain my allergens. I did not want to accept living with that "fullness", the feeling you are describing at my vaginal opening and also the nuisance of frequent urination's or leakage when I sneezed Your travel expensives would include housing for a period of time- weeks for all the preoperative appointments and also at least a week of hotel stay afterward because it would not be advisable to travel until you healed in case of complications. Yet after post-op check have not needed to see surgeon again. The price in NY you mentioned does not sound high based on US prices.
I have heard many people from the US who do not have insurance travel to other countries for surgery because the US has such inflated hospital and medical prices. Yet if this surgery is not available elsewhere your options are limited.
Insurance- As I have mentioned our US senior insurance which starts at age 65 paid 80% of the expense and my medicare supplement Plan F paid the other 20%.
For those not familiar with medicare, your medicare beginning at age 65 is not free. You are paying for this insurance. Your medicare monthly insurance charge as well as any additional medicare supplement monthly charges are deducted from your social security monthly payment. One great part of medicare is that all pre-existing conditions are covered, whereas if a person try's to apply for new insurance elsewhere the company can deny coverage for existing conditions. For example if you now have prolapse they could deny surgical coverage for this operation. So veronicat I wonder if you could find any insurance to help you the medical expense for your condition.

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@gardeningjunkie

Like Gail mentioned mesh has made improvements. The original mesh caused rejection and complications for many patients and lawsuits abound. My surgery was 4 years ago and I was told I had the "new mesh" which was not associated with the same complications (yet of course was fearful because of my extensive fiber allergies). I was assured this material did not contain my allergens. I did not want to accept living with that "fullness", the feeling you are describing at my vaginal opening and also the nuisance of frequent urination's or leakage when I sneezed Your travel expensives would include housing for a period of time- weeks for all the preoperative appointments and also at least a week of hotel stay afterward because it would not be advisable to travel until you healed in case of complications. Yet after post-op check have not needed to see surgeon again. The price in NY you mentioned does not sound high based on US prices.
I have heard many people from the US who do not have insurance travel to other countries for surgery because the US has such inflated hospital and medical prices. Yet if this surgery is not available elsewhere your options are limited.
Insurance- As I have mentioned our US senior insurance which starts at age 65 paid 80% of the expense and my medicare supplement Plan F paid the other 20%.
For those not familiar with medicare, your medicare beginning at age 65 is not free. You are paying for this insurance. Your medicare monthly insurance charge as well as any additional medicare supplement monthly charges are deducted from your social security monthly payment. One great part of medicare is that all pre-existing conditions are covered, whereas if a person try's to apply for new insurance elsewhere the company can deny coverage for existing conditions. For example if you now have prolapse they could deny surgical coverage for this operation. So veronicat I wonder if you could find any insurance to help you the medical expense for your condition.

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@gardeningjunkie
Boy is that right. Medicare IS NOT FREE! I get the feeling with some of the ongoing discussions in the political arena that people think Medicare is free. I have been on it 6 days now, since I turned 65 earlier this month. I am not taking my social security just yet so I am paying for my Medicare until that time comes. It feels different to have to pay for it directly than to have it taken out of a check. I will likely start Social Security in about a year. I am lucky though as my secondary insurance is free in that my previous employer (I retired in May) provides secondary insurance for those who were vested in the plan when we retired. So I do not have to wade through all the "Options" or talk to all of those pesky salespeople that keep calling my house because somehow they know I just turned 65. The calls just keep coming.

I have not had to use my Medicare at all yet but I am sure I will soon enough. I am wondering if it will be as seamless as my employer said it would be.

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Medicare has been surprisingly easy. You get regular paper statements and their web site is easy to navigate. When confused I found it easy to call and talk to a person and the wait time is short.
In the almost 6 years I have been on it I have never had a MD, Specialist or hospital not accept it. I picked a supplement that was not an Advantage Plan which limits your choice of doctors. It's too restrictive for my health issues. Also you might find yourself driving an hour to see a doctor when a very good one is closer.
When going on Medicare initially it is confusing because of all the supplement plans. You can study it yourself, but it is a challenge. As you mentioned once one turns 65 we get bombarded with mailers with insurance agents offering free help in choosing a plan. But I was helped this way. I was skeptical but decided to call an agent in my local area. I felt very comfortable talking with him on the phone, we scheduled an appointment and he came to my home and laid out all the plans for me and answered all my questions. I had multiple health issues so picked a premium plan. Medicare pays these independent agents to explain the program to us and help us sign up. He didn't care which plan we pick, but points out pros and cons and the cost. He doesn't get a commission for selling us a specific plan. Yes he asked if we were interested in other types of insurance (this is why they do this for the small payment they get from Medicare). I explained we are on USAA and had been for 45 years and were happy with it and were not making any changes. He put no pressure on me and was a real gentleman. Medicare will contact you to review the agent.
I also should be more specific as to how the monthly premiums are paid. For Medicare itself it comes out of our Social Security payments, but for the supplements it comes out of our checking account each month. My husband is 72 and I will be turning 71 later this year and the cost with SS, which only pays 80% of medical bills, and our medical supplement which pays the additional 20% not paid by SS plus all co-pays with no deductible (this is an expensive supplement) and also a prescription drug plan (which is pretty lousy) the cost is $750.00 total for both of us.
Fortunately my husband does consulting and the main firm he gives advice to as a benefit reimburses him for both Medicare and the supplements payments. With my multiple surgery's and several other chronic diseases it would be a blessing even without his employers reimbursement.

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@gardeningjunkie

Medicare has been surprisingly easy. You get regular paper statements and their web site is easy to navigate. When confused I found it easy to call and talk to a person and the wait time is short.
In the almost 6 years I have been on it I have never had a MD, Specialist or hospital not accept it. I picked a supplement that was not an Advantage Plan which limits your choice of doctors. It's too restrictive for my health issues. Also you might find yourself driving an hour to see a doctor when a very good one is closer.
When going on Medicare initially it is confusing because of all the supplement plans. You can study it yourself, but it is a challenge. As you mentioned once one turns 65 we get bombarded with mailers with insurance agents offering free help in choosing a plan. But I was helped this way. I was skeptical but decided to call an agent in my local area. I felt very comfortable talking with him on the phone, we scheduled an appointment and he came to my home and laid out all the plans for me and answered all my questions. I had multiple health issues so picked a premium plan. Medicare pays these independent agents to explain the program to us and help us sign up. He didn't care which plan we pick, but points out pros and cons and the cost. He doesn't get a commission for selling us a specific plan. Yes he asked if we were interested in other types of insurance (this is why they do this for the small payment they get from Medicare). I explained we are on USAA and had been for 45 years and were happy with it and were not making any changes. He put no pressure on me and was a real gentleman. Medicare will contact you to review the agent.
I also should be more specific as to how the monthly premiums are paid. For Medicare itself it comes out of our Social Security payments, but for the supplements it comes out of our checking account each month. My husband is 72 and I will be turning 71 later this year and the cost with SS, which only pays 80% of medical bills, and our medical supplement which pays the additional 20% not paid by SS plus all co-pays with no deductible (this is an expensive supplement) and also a prescription drug plan (which is pretty lousy) the cost is $750.00 total for both of us.
Fortunately my husband does consulting and the main firm he gives advice to as a benefit reimburses him for both Medicare and the supplements payments. With my multiple surgery's and several other chronic diseases it would be a blessing even without his employers reimbursement.

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@gardeningjunkie
It sounds like we both have a pretty good situation. Not having to go through figuring out all of the supplement/advantage plans, I feel likeI got off easy. Since my former employer provides my secondary insurance (and it is at no cost for the retiree), I don't have to worry about that and everything stays the same in terms of what they will cover. I did not have to figure it out to help my mom either since I did most of her stuff. She just had my dad's former employer as her secondary insurance as well. I guess I should double check when I go to my existing doctors though to make sure they will continue taking me and that my services will be covered by medicare.

I went to see an Integrative Medicine Doctor earlier this year when my thyroid was a little high and I noticed on their website they did not take new medicare patients. I have gone there twice so far and last time I was there I asked about whether I could still keep coming there after I went on Medicare. They said yes that they continue to see their existing patients once they go on medicare, but they do not take a new patient if they are already on medicare. I thought that was rather odd. I went for a check up with the urogynecologist who did my prolapse surgery and I had also noticed that his wife who offices with him had discontinued taking medicare (she is a regular gynecologist). I asked him if he was doing the same and he laughed and said that if he did not take medicare, he would not have any business (I guess that is true since he does a lot of prolapse surgeries).

I did opt to keep my dental and vision insurance through my former employer which costs me a tiny bit each quarter (I think it is $35) but it is totally worth it because I learned that even though dental insurance has a low total annual benefit and probably isn't going to cover the total cost of any big procedures like a root canal, etc., they do give you discounts if you have dental insurance. And if nothing big happens that year, it is about a break even for being worth it for covering all your cleaning, x-rays, etc.

So all in all I can't complain. I would gladly pay more if someone could get rid of my chronic pain. It is daily and it is certainly something that can drag you down.

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Sorry you are dealing with chronic pain, living with it can be debilitating and knowing it will be constant is depressing. Several years ago I was suicidal dealing with 24/7 pain and unable to sleep because of pain for a condition unrelated to prolapse. Thank goodness I had the internet to self educate myself as my doctors were failing me. Yet working with different doctors I have figured out solutions, how long this will last, time will tell so I take advantage of my health now and every night I look forward to getting in bed knowing I will have a comfortable good nights sleep. I don't even take Advil or Aleve as it raised blood pressure and have no problem dealing with the average aches and pains of aging. I hope you can improve your chronic pain issues.

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@gardeningjunkie
Thank you for your concern. About 10 years ago I started having ankle and foot swelling and pain down my left leg. Since I was teaching 3 college classes every other day, on the days I would teach I would limp back to my office after a long day on my feet. On the days I did not teach I would largely stay home on my couch. After a lot of searching, and more doctors than I can count, it was discovered that I had scoliosis, spinal stenosis and also some issue with my feet from 25 years of dancing on point (toe shoes). I went to an adult spine doctor who dealt with adult scoliosis and I was told that the only thing that could be done was surgery to insert a rod in my back from just below the waist to my neck. After a lot of advice, I decided this was not a surgery I was willing to have because it might not help and in fact, might cause more pain in the long run. I also did not like the doctor as I felt he was all too anxious to cut on me.

I had my left ankle fused and a year later after it was clear it had fused properly (so they say), I had the screws removed and also some tendons repaired. But the tendons in my right lower leg are like string cheese in that they are torn vertically rather than horizontally so it is quite difficult to repair them. It is possible to remove them but I have not moved forward on that approach as yet. I have done more physical therapy than I can remember and for a while hydrocodone helped me. I have cut my hydrocodone way down and am taking something called belbuca now which is a small tab that you put in your mouth twice a day and wait for it to dissolve. It worked really well on my nerve pain at first but it is not working so well now and I am at the maximum dose. Throughout all of this I have never been offered anything stronger than hydrocodone. I guess this is good but sometimes I think there is a little too much emphasis on the abuse of meds and not enough emphasis on the good they could do. I cut my hydrocodone in half in one week and had been taking it over ten years so I don't think I am an abuser by any means. I also take Tumeric and a drug called Zipsor which is an anti-inflammatory that I don't think is going to be covered any longer unless my doctor appeals it. I also take Gabapentin for nerve pain.

The funny thing is that my pain does not disrupt my sleep and never has. I am thankful for that. Sorry you had to have that happen to you. Sleep is so important in order to manage the pain when I am awake. I know that because when I don't sleep well, the pain bothers me more the next day. I have tried injections, chiroopractic, PT, and a host of things I cannot recall. My current pain doctor is now moving into functional medicine which is not helping me much at all. I still go to them because I like him but you mostly see the PA and all the people working for him now are not really trained in pain management. I go every month or two, get my Rx/s and try to figure out on my own what I can do to manage it. I am doing some things to my house right now and once that is done, I am going to have to figure out a new plan of attack..

I am interested, if you are willing, in hearing how you managed to improve your pain situation. I don't want to pry of course and maybe you have talked about it on the chronic pain discussion page. I actually first found Mayo Clinic Connect when I visited the Chronic Pain Page. I only came to Women's Health when I had the bladder prolapse and noticed how many other people had prolapse. It was nice in a way to have something that could actually be fixed, unlike my pain situation. And also nice to be able to help a few people with their decisions regarding prolapse and other women's health issues I had dealt with.

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I was dealing with chronic itching, pain and stinging from eczema. i was on fire. Long story, but after decades on dealing with eczema had an escalation in my internal symptom-sand learned about testing (not from a doctor)%, found a doctor specialized to perform the test which could determine the cause of my type of eczema rather than my other derms who were only treating symptoms. Without knowing what was causing it I was a patient for life! Test results identified allergens- changed 90% of my clothing, all my shoes, much of my bedding, mattress, furniture (or cover with heavy plastic which stops the off gassing of these chemicals) all my cleaning and grooming products except Vaseline, some of my medications, well the list goes on. Yes I need to control my contacts, but only those I know even realize I live like this. I carry a large plastic bag to cover movie theater chairs or else I would itch in 5 minutes. These chairs have fabrics which are blended with an element from rubber and also have chemicals in the fire retardant and Scotch Guard, well I could rant and rave about our American lobby groups which apply pressure $$$$$$$$$$ on our congress so they allow chemicals and other toxins into our products at an "acceptable" level. Well, 95% of the population is fine but the other 5% suffer in time as these toxins enter our body and our body raises a histamine army which creates inflammation trying to rid our body of them. Now 5 years after testing my pain level from Allergic Contact Dermatitis is a non issue.
Other allergies not even mentioning to you, but life is good right now. I'm active and happy.

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@gardeningjunkie

Medicare has been surprisingly easy. You get regular paper statements and their web site is easy to navigate. When confused I found it easy to call and talk to a person and the wait time is short.
In the almost 6 years I have been on it I have never had a MD, Specialist or hospital not accept it. I picked a supplement that was not an Advantage Plan which limits your choice of doctors. It's too restrictive for my health issues. Also you might find yourself driving an hour to see a doctor when a very good one is closer.
When going on Medicare initially it is confusing because of all the supplement plans. You can study it yourself, but it is a challenge. As you mentioned once one turns 65 we get bombarded with mailers with insurance agents offering free help in choosing a plan. But I was helped this way. I was skeptical but decided to call an agent in my local area. I felt very comfortable talking with him on the phone, we scheduled an appointment and he came to my home and laid out all the plans for me and answered all my questions. I had multiple health issues so picked a premium plan. Medicare pays these independent agents to explain the program to us and help us sign up. He didn't care which plan we pick, but points out pros and cons and the cost. He doesn't get a commission for selling us a specific plan. Yes he asked if we were interested in other types of insurance (this is why they do this for the small payment they get from Medicare). I explained we are on USAA and had been for 45 years and were happy with it and were not making any changes. He put no pressure on me and was a real gentleman. Medicare will contact you to review the agent.
I also should be more specific as to how the monthly premiums are paid. For Medicare itself it comes out of our Social Security payments, but for the supplements it comes out of our checking account each month. My husband is 72 and I will be turning 71 later this year and the cost with SS, which only pays 80% of medical bills, and our medical supplement which pays the additional 20% not paid by SS plus all co-pays with no deductible (this is an expensive supplement) and also a prescription drug plan (which is pretty lousy) the cost is $750.00 total for both of us.
Fortunately my husband does consulting and the main firm he gives advice to as a benefit reimburses him for both Medicare and the supplements payments. With my multiple surgery's and several other chronic diseases it would be a blessing even without his employers reimbursement.

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In NC we can call the local county hospital or senior center and a representative sets up a free appt. and uses SHIP – a computer program which helps you make the decision of which Medicare supplement plan is best for you. Most decisions are based on which prescription medicines you use.

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@coralbells1

In NC we can call the local county hospital or senior center and a representative sets up a free appt. and uses SHIP – a computer program which helps you make the decision of which Medicare supplement plan is best for you. Most decisions are based on which prescription medicines you use.

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Hi, @coralbells1 – you'd mentioned a bit back that you'd had prolapse surgery many years ago and your bladder has now fallen again. Are you considering another prolapse surgery or looking at other ways to manage it?

Liked by gardeningjunkie

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@baxtersmom

@veronicat
I do not know where you are located but I am in Austin, TX and I had my surgery here by Dr. Tomas Antonini. It was done in 2017, I had very little pain and have had no complications since then. I had a very big (level 4) bladder prolapse. The use of mesh today does not involve the type of mesh that caused all the problems and lawsuits. The mesh today is very thin (like a nylon stocking) and it is not the same mesh as before. Dr. Antonini showed me the old kind vs. the kind he uses because I was very worried about it as well and they are very different. In addition, whether or not your doctor uses mesh is determined by your own unique situation. If your ligaments are weak and your doctor does not believe they can be repaired so that they will hold, then the doctor will likely propose using mesh. Particularly since you may be paying for it yourself, you don't want to have your prolapse reoccur and have to have a second surgery. Since my ligaments were in very bad shape, I had to have the mesh if I wanted it to hold and not have a second surgery. So it is based upon your situation and whether or not your ligaments can be repaired. This is what determines the type of procedure you have. Mine was done with mesh and with the DaVinci robot and it was very noninvasive.

I know that the prospect of travel and the expense is a big consideration for you so I am glad you are doing your research ahead of time. I highly recommend Dr. Antonini as another option for you depending on where you are located. Also, you should be very comfortable with the doctor. I saw 3 before I picked Dr. Antonini. He has a good bedside manner and is very kind. Best of luck to you and please let us know what you decide to do.

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Hi girls, I am now pleased to tell you that after seeing 2 top Urogynecology specialist one in Houston and the other one in Mayo clinic Rochester, I have been advised not to do any surgery for my bladder prolapse at this stage. To be honest I was a little bit disappointed because I was expecting to do surgery for my condition and I traveled from very far – Europe. I guess, I have to consider the advice. Nevertheless I don’t know how I’m gonna do my previous activity before the hysterectomy I had six months ago. I used to do yoga and Pilates, Now I am scared to push my body not to damage even more my pelvic floor prolapse. Please let me know what you think, should I pursue meeting with other doctors so I can do the surgery. Or take the advice of this 2 Doctors I met and not do nothing at the moment. I am really confused. Will appreciate any advice. Thank you

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@veronicat
What was the reason the doctors gave you for not recommending prolapse surgery at this time?

Liked by Lisa Lucier

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@lisalucier

Hi, @coralbells1 – you'd mentioned a bit back that you'd had prolapse surgery many years ago and your bladder has now fallen again. Are you considering another prolapse surgery or looking at other ways to manage it?

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The bladder has fallen, but the bulge is in the front of the vagina, so if she tacks my bladder again it will definitely need to be put it in a sling and there won’t be much room for bladder to expand. She says not to have it done unless I absolutely have to. I did go to bladder physical therapy which was well worth the time, travel and money! It is usually only available at larger teaching hospitals.

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